Month: March 2018

Ok well, I guess I’m right back at it. That was quick! But I have some cool news to share! …and it revolves around all the awesomeness that there is left to be had in my life! So please watch my latest video Blog and subscribe if you want to be alerted when I post something new.

Thanks for watching!

…and take the time to watch, hear and listen to this message below as well.

Why??? Because…

It’s Good To Be Alive Today

Big Love for DIFTL!

With all my years working for Apple it looks like my creative juices are finally flowing again. Enough anyway that I’m trying to pick back up what I learned about rudimentary video editing again a little bit. So I tried some old & new tricks to make the vlog a little slicker. But other than a few splices here and there my audio was unscripted and one take, so forgive me forgetting how to use the English language in quite a few places. lol

This whole process is so freaking frustrating and confusing and I’m just so sick of politicians from all sides of the aisle telling patients with little hope of survival what promising treatments they can pursue. In my case, I would like to try a Stem Cell treatment currently under Phase 3 Clinical trials here in the US. The current trial, if you’re accepted into it, gives patients a 50% chance of getting the treatment or 50% chance of getting Placebo. Well… I don’t have time to wait on the FDA, and I don’t have time to waste on the chance of getting a sugar pill. Sorry, I’ve already gone through one ALS drug clinical trial which the FDA finally did not approve after being on it for an entire year. All that time not knowing if I was on it or getting a placebo. I want the choice to get this procedure done now, safely… in this country. Not South America, not Asia, not the Middle East. We need Mass General, Mayo Clinic…. the best medical institutions in the world. Sadly, I think even if this bill passes today, we are still a long ways away.

I want my “RIGHT TO TRY”
End Rant…

Right To Try allows terminally ill Americans to try medicines that have passed Phase 1 of the FDA approval process and remain in clinical trials but are not yet on pharmacy shelves. Right To Try expands access to potentially life-saving treatments years before patients would normally be able to access them.

Advocates for Americans facing terminal and life-threatening illnesses, wrote to urge our support for the Trickett Wendler, Frank Mongiello, Jordan McLinn & Matthew Bellina Right to Try Act of 2018. This bill will help protect the right of sick Americans to try to save their own lives. Fewer than 3 percent of cancer patients can participate in clinical trials, and for less common diseases like ALS and deadly Duchenne muscular dystrophy, the numbers are even lower. Right to Try gives people who cannot participate in trials a new path to access promising treatments.

Another great night out to see some live music with good friends., and a great surprise appearance by my step-sister Julie! So awesome that she came out to hang with us. JJ Grey & Mofro were looking sharp, as the whole band was dressed in fine suits. That a bit kinda weird as I didn’t think that was JJ’s style, but they looked and sounded fantastic. One of the many musical highlights for me was their take on a cover of “Hey Jude.”

Each time I go out now I feel like it’s just a little bit harder than the last time as the ALS progresses. My arms are losing strength and it’s hard not to give people a nice full hug, but I’m not going to let it stop me from enjoying every minute. It’s certainly not affecting my smile! Can’t wait for the next show.

Once I finally set out to publish this blog, I thought long and hard about what I wanted to accomplish by opening myself up in this format. These were basically my goals…

Communicate to friends and family, stay connected

Help others embrace the brighter side of their troubles. Show that it’s ok to be vulnerable

Document my journey, and having my writings about my experiences on record

Revisit special memories…. share some cool stories

Celebrate life. There’s a whole lot of awesomeness to be had

Share, discuss and celebrate live music! (because that’s my jam)

So I will continue to use this space to share my unfiltered experiences and thoughts. And not just the sad stuff, but all the great stuff. I’m grateful that you have taken any time to read my ramblings or look at my photos or check out whatever music I share..

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This coming Saturday night I’ll be heading over the the Capitol Theatre to see one of the most soulful artists I know. One of the coolest dudes I’ve ever met. If you’re going the Cap on Saturday to see JJ Grey, stop over to say hey! I’ll be parked in my normal spot in the ADA section. Soaking up some music for my soul!

I haven’t written anything here in the last week or so, but I have been doing a lot of thinking and reflecting. A dangerous yet interesting and adventurous place for me to be… in my own head. As each day passes, I’ll notice a little something about myself physically here and there that was a bit different from the previous day. It really is quite mysterious and frightening all at once. Lately it’s the use of my left arm strength and dexterity of my fingers. My brain is sending the signals loud and clear to my hand… “Yo arm… reach across the table and grab that water bottle over there!” well it’s really quite frustrating because my arm’s just like, “What was that brain my friend? I’m not picking up the signal you’re trying to relay over here.” Communication breakdown! (queue Jimmy Page guitar riff). I digress… but this what I’ve had on my mind to opine about today. This mind, body connection.

I’m kinda blown away with this concept. This connection between the brain and the body happens on both physical and chemical levels. One never thinks about it…. it’s automatic, it’s instantaneous. I’m certainly not going to bore you with my findings from articles, medical journals and the consultations of amazing spiritual healers. But here it is in a nut shell, there are these little guys called “motor neurons,” or nerve cells that send electrical output signals from the brain to your muscles. And these little guys are needed for your muscles to actually work and function. So yeah, they’re important little guys. We all have em, honestly I never gave them enough credit for the hard work they do. They wield a heck of a lot of power. Those of us with ALS know all to well the frustration of having a brain that remembers how to move correctly, but a body that simply doesn’t. For us, when these motor neurons lose their strength and die, they don’t replenish. Once they’re gone… they’re gone, gone… and nothin’s gonna bring them back. They’re gone.

Yeah so for me this process started almost 5 years ago with my left leg, eventually making it’s way around to the right one. Nobody knows why. Nobody knows how. Heck a bunch of pretty good neurologists couldn’t diagnose it for almost 2 years. Crazy…. I know. Doesn’t seem to make much sense. Completely healthy one day, minding my own business and my left foot starts getting weak. And so this new journey begins. While my mind and my sight will be spared. I notice it slowly, take over parts of my body. But I’m still here, and I fight on with what motor neurons I have left! Sometimes it feels like the fight scene with the Knights in that old Monte Python movie. “It’s just a flesh wound!” haha… I freakin’ love that scene.

So why am I depressing everyone today? I swear I’m not bitching or feeling sorry for myself. I’m actually in a pretty great mood right now. Sunday night shows rock! hmmmm…. Oscars, Walking Dead or Homeland. All three? why not! I promise not to do this here often. But I need to do what I can to help my brothers and sisters who join me in this fight. There is a cure out there some where, I’m so sure of it. But the urgency and the attention to this cause is not where it needs to be. If the cure doesn’t come in my time, well I must do what I can to spread awareness for the families who will continue to suffer long after me.

I knew exactly nothing about Motor Neuron Disease, as it’s called throughout the rest of the world. I’m far from the only one that had no idea what it is, so I must do what I can to explain what the heck this is like and what it does to people. With so little attention paid to it in the general public, finding a cure is just gonna be that much harder to attain.

So while we watch these perfect movie stars walk the red carpet tonight, think about those you love around you. We all have our battles and we can choose to spread awareness to things that really matter in this world. And so I battle on… “it’s just a flesh wound!”